Brand new!

[Bri]

Hello all!

I am new to this forum (however not forums in general, I also belong to a wonderful horse forum) and figured I would introduce myself and share my story.

I am still what I would call 'recently' diagnosed with Crohn's Disease. I received the diagnosis in September/October of 2009. At the time I was pretty devasted; as most are when finding out they have an incurable disease. I had gone to Navy basic training, and was discharged after a month because of being severely anemic (and when I mean severe, I mean talking blood transfusions etc). Suddenly after getting back I would get these intense pains in my abdomen and have no idea why, I never had abdomen pain as a child, or even a history of stomach troubles. Finally, I saw my doctor and after a CT scan she gave me the news (and unfortunately I am in the moderate to severe category). I think perhaps the most pain I felt was in the fact I would not be able to go back into the Navy and persue my lifelong dream of serving in the United States military. I'm sure the story of how you found out you had Crohn's is similar so no need to really divulge.

The reason why I still feel as though I am recently diagnosed is because I have had very little progress in the last (almost) three years. I am now on to my third GI doctor, and really feel like I found 'the one' this time. I had the anaphalactic reaction to Remicade, tried Humira (which my current doctor says I failed since remission has not occured in the past years AND I was hospitilzed for Crohn's three times while on it) and am now just taking good 'ole Prednisone until I can start Cimzia in the upcoming weeks. My biggest problem right now is that my Crohn's has led to infection/inflammation of other organs so I am trying to get everything calmed down as quickly as possible. Surgery is looking likely in my future.

Colonoscopy #3 is scheduled for tomorrow, so I am having a grand ole time drinking my prep and reading up on the forum

About me besides the demon in my abdomen:

I am 25, happily engaged to a wonderful man who deals with all aspects of the disease in great stride, and will be graduating from college in May. I look forward to getting to know everyone and offering my insight!

Bri

 

[Stephy Chelle]

Hi Bri. I'm Stephanie. Wife and mother still awaiting a concrete diagnosis after 15 years with symptoms. Intermidiate colitis until next test is done and looked at in the next few weeks. I am new to the forum as well and just wanted to say hiya and welcome.

 

[David]

Hi Bri! A most hearty welcome to you. I'm sorry your dream of serving in the military was dashed by this terrible disease. A few things:

1. You mentioned issues with other organs. If you care to share, which organs, and what exactly is going on?

2. You may want to take a look at our Cimzia Club.

3. Based upon where you are in the treatment pipeline, I'd suggest reading up on enteral nutrition and stem cells.

4. Have they tested your vitamin and mineral levels such as vitamin D, vitamin B12, and folate?

All my best to you!

 

[Bri]

Thank for the response!

1. As for my other organs I am lucky that I am fistula free, however, I have small non-drainable abscesses around my Crohn's raging area (ileocolonic), and because of that it led to infection and or inflammation (the doctors' still aren't sure which is really happening) to my ovary and fallopian tube on that side, and even a slightly aggravated uterus :/. No fun! I keep telling them to stick to one organ system! It ended up sending me to the hospital for the pain, was told it was a burst cyst and discharged; severe pain continued for two weeks and then ended up in another hospital for a week. I was overloaded with antibiotics (Doxy and Zosyn), then when it was not relieving the pain was given IV steroids. At this point it was determined it was the Crohn's causing the havoc and I switched to the GI doctor who saw me in the second hospital. She is a miracle worker. I was released and continued on more antibiotics (Cipro and Flagyl) and started Prednisone. That brings me to where I am today. However, still have the pelic pain (and by that I mean not a Crohn's pain, but definitely lower and in the other organs). The doctors are still slightly stumped, so I am doing a c-diff test and a special viral anitbody test to see if something is just lingering.

2. I will DEFINITELY look into the Cimzia club as I know it's somewhat more recent of a treatment? I also tried the 6MP but had terrible side effects from that drug as well.

3. I was in the hospital for a week on TPN so I have experienced that, but it severely depressed my body and brought my pulse into the 30's, scary! Never heard much of 'alternate' nutrition until that time.

4. I have passed flying colors in all lab work, except still slightly anemic, so that is a good thing! Since the hospital stay I have been tested for pretty much everything, including ultrasounds, MRI, and CT scan. Whew. As I mentioned a colonoscopy tomorrow, and another ultrasound next week.

 

[Angrybird]

Hi Bri, just wanted to say welcome to the forum. I am sorry that this disease stopped your dreams of having a career in the Navy. I assume your scope today is to check for narrowings? I really hope it shows a better picture than expected, let us know how you get on :hug: